Parental training for the behavioral management of children with Prader-Willi Syndrome: impact on the mental health and parenting practices of the caregiver

ABSTRACT Purpose: we verified the impact of the parent training program for management of children and adolescents with Prader-Willi Syndrome on the mental health caregivers. Methods: the sample was composed by five mothers of children / adolescents with Prader-Willi Syndrome between 6-18 years. The data collection instruments were: a) Questionnaire for verification Mothers' knowledge about the syndrome, b) Inventory Self-Assessment for Adults 18-59 years c) Inventory of Parental Styles / maternal and paternal educational practices; d) Survey of difficulties and concerns about their children. The study was conducted in four phases: pre-intervention, intervention, post-intervention and follow-up. Results: as a result we find that mothers have adopted parental educational practices based on positive monitoring, decreased risk practices. Conclusion: we conclude that there was an improvement in indicators of emotional difficulties of mothers, seized identify and manage factors that harmed the physical health, behavior and school learning of the children and the need to involve other family members in child care.

摘要
目的：本研究旨在验证普拉德-威利综合征（Prader-Willi Syndrome）患儿及青少年家长管理培训项目对照料者心理健康的影响。
方法：研究样本为5名年龄介于6至18岁的普拉德-威利综合征患儿/青少年的母亲。数据收集工具包括：a) 母亲综合征认知验证问卷；b) 18-59岁成人自我评估量表；c) 父母教养方式/双亲教育实践量表；d) 子女照料困难与担忧调查问卷。本研究分为四个阶段：干预前阶段、干预阶段、干预后阶段及随访阶段。
结果：研究结果显示，母亲们已采用以积极监督为核心的子女教养方式，风险相关行为发生率降低。
结论：本研究证实，母亲的情绪困难指标得到改善，能够识别并管控损害患儿身体健康、行为表现及学校学习的相关因素，同时明确需吸纳其他家庭成员参与子女照料工作。